How To Survive The Barbed Wire Disease That Is Endometriosis
I didn't want to write this blog post. In fact, I have spent exactly 20 days postponing its creation. You see, March is National Endometriosis Awareness Month, a disease I have much too close of a relationship with. I do not need a month to recognize the havoc endometriosis reeks on my life on a daily basis. In fact this month being National Endo Awareness Month feels like one big joke right now, considering I spent last weekend in the hospital due to the silent disease. I've had surgery, I've had a DNC, I've bled for seven months in a row which led to anemia, I've tried hormone therapy to no avail, I've gone through six months of chemotherapy...and still, my endometriosis wins and continues to cause severe pain in my life.
I cannot tell you how many times I have been rushed out of the ER with a prescription for pain meds, a doctor telling me that there is nothing they can do because it's the endometriosis. Hospital visits are filled with looks of pity from nurses who know there is little they will be able to do to help 'fix' you.
Endometriosis feels like rusted barbed wire twisting itself inside of your abdomen until you are sure there are no more internal tissues or organs left for it to slice into. Even vicodin and morphine fail to ease the pain that comes with the growing scar tissue, to the point that it's better to take nothing at all than deal with the side effects of pain medication. On top of that, it impacts how your other organs function. For example, if it grows on your bladder, you can forget having normal urinary symptoms and can add urinary tract probs to your list of health issues. It gets worse when you are stressed, which is most likely exactly the moment you need to add the most excruciating pain to your day. It doesn't care if you have prom, or a deadline for work, or if you need to stand up in front of 500 people and give the best presentation of your life.
I was supposed to go to Mexico last month with my boyfriend to celebrate his father's 60th birthday, but our trip got derailed due to Delta canceling our flight. Stranded in Atlanta, we decided not to let our tickets or vacation days go to waste and flew to Colorado where my grandpa was just admitted into the hospital due to kidney failure. Instead of relaxing on a beach, we spent four days helping my family and going between my dad's house and the hospital. The physical and emotional stress caused a drastic flare in my endometriosis.
I rested the whole weekend we returned, knowing a endo flare was on the horizon if I did not slow down. The resting was not enough. The next week I ended up in urgent care twice, followed by a lovely trip to the hospital.
I was in church when the pain got so horrendous, I doubled over. I insisted that we wait to take communion before I was rushed to the hospital. By the time I got to the hospital, I could not even walk to the door and fell to my knees against the hard cement of the parking lot. A security guard had to get me into a wheelchair so I could get inside.
And, of course, no one can do anything because endo is one of the allusive diseases that eats away at you but has no cure. So, I am on to another round of hormone therapy and doctors poking at me to see if they can at least provide a moment of relief.
System management. That's what endometriosis becomes. You have to learn to manage the symptoms, no matter how severe, and then make damn sure you have a plan in place to manage stress and keep your spirits high despite the pain (and the awful side effects of hormone therapy).
While I did not want to write this blog post because I feel like I have lost the battle against endo this month, I realized I had to because in my ten years of battling the disease, I have found some pretty helpful tips that keep me going on with my life that need to be shared. For those also struggling with endometriosis, or any other chronic disease for that matter, here you go:
Forget Other People's Opinions
You are going to face people who do not believe you are sick because you put makeup on and 'look fine'. Who gives a sh*t. You cannot care what other people think and survive the daily battle of having a chronic disease. You know your body and no one else needs to. I've had days where I spent the night in the hospital and showed up at work the next day with a full face of makeup, only to be told that it wasn't appreciated that I missed the day before and I seem fine. I've had even physicians think I must not be in 'that much pain' because I managed to get ready that day and put on a dress. People can be super shallow and you need to learn that God and you are the only judges out there-- F the rest of them.
Always Get A Second, Third, Fourth Opinion
I've had doctors who wanted me to have surgery immediately and doctors who wanted to try hormone therapy before putting my body through an even more traumatic experience. Do your homework before committing to any treatment plan. What's right for one person, might not be right for you. Make sure you know all of the options before you are going to extremes.
Consider Alternative Medicine
Alternative medicine has been one of my biggest allies. Meditating and doing yoga on a daily basis have helped alleviate my stress which helps me deal with my pain in more healthy ways. I also have found many different kava teas that help alleviate the stress which contributes to the pain, and have even tried acupuncture.
Do Not Go The Narcotic Route
When I was first diagnosed, doctors just wanted to throw months' worth of narcotics in my face and tell me to go on with my life. I was super uncomfortable with this approach. After a week of taking them, I was having tons of side effects liked increased nausea and confusion. I immediately stopped taking them and refused for this to be a treatment option in the future for me. I turned to more NSAID (Advil)-type medications that helped treat the inflammation of endo, rather than narcotics.
Continue Your Life As-Normal
This is essential to winning the fight against any chronic disease. You absolutely have to continue your life as normally as possible. Go out for drinks with friends, continue going after that job you want, go on that trip you've always wanted to go on. Live on in spite of the pain. I promised myself when I was diagnosed that I would never let pain determine what I do with my life. I'm not saying there aren't rough days where I cry and scream into my pillow because of how bad my endo has gotten, but on a day-to-day normal basis I convince myself to move beyond the pain and still do what I need to do. Don't let endo define your life. You have to keep living. Learn how to do life well with the pain, rather than letting the pain keep you from doing life well.
Find A Support Group
There are many support groups out there, including Facebook pages, which support people who have endometriosis. You can find tons of information from alternative medicine routes that worked for other sufferers to physicians who have high success rates on treating endo.
Also surround yourself with a tribe that knows you have endo and are willing to let you live your life in spite of it. I have an incredible boyfriend, parents, boss and best friends that know the intimate details of my struggle with endometriosis and support me through it. They are my cheerleaders when I am having a bad day. I have asked them to not treat me differently because of it, and they do their best not to so I can continue living the most normal life possible. However, they are more than willing to jump in and take the reigns from me when I am having an unusually hard day with it.
You HAVE to stay positive, and this doesn't come from a treatment or medication >> it comes from somewhere deeper in your soul. Don't ever let the negative thoughts that you will never get through this, or you will never have children, overtake your positive outlook on life. You can survive this disease, and you can survive it well. It's up to you and your mindset every single day. Whether it's meditation, journaling, dates with your best friends, watching a funny show or doing yoga, find the thing that brings you joy throughout your battle and cling to it with everything you've got. For me, it's my faith in God, my support system, writing, photography and a steadfast hope in my future that keeps me on the positive side of life, no matter how intense the pain gets.
I have severe endo, but still have a successful career, relationship and personal brand. You do not have to let the pain control you, instead turn the energy from the pain into something positive that can help impact this world.
If you suffer from endo, I feel you, girl. Please know that you have an advocate for life, and you can always reach out to me to discuss all things endo. If you don't have endo, but have a chronic disease, I also feel for you. If you have any other ideas for how to deal with chronic disease, or have support groups that you know of, please leave them in the comments.
If you do not have endo, or a chronic disease, you probably know someone that does. Hold them extra tightly and let them know you care. Be patient with them when they sometimes flip out due to all of the stress, and understand that there is no way of knowing what it feels like to have barbed wire scraping the inside of your abdomen, until you do.
- Marji J. Sherman